Tuesday 16 January 2018

Second A&E admission of the year - "Sick and Tired of Being Sick and Tired"

So I managed to make it into the the TC today; during Community Meeting which is the first group of the day on Tuesdays my Myoclonic Seizures (involuntary joking movements in my right arm and shoulder). They eased after a while and I was able to rejoin the meeting, but then ever so suddenly I got a very brief aura (pre-seizure feeling) and the next minute I was off the chair and having seizures on the floor. For me one minute I was sat at the table; the next I had two paramedics sat around me.

The paramedics knew me, (though to be honest a lot of the paramedics know me by now). They gave me diazepam which brought me out of my status seizure episode - a status seizure episode is a cluster of seizures that go on for a prolonged length pf time. For me when this happens I swing between Tonic Clonic seizures and unconscious myoclonic seizures; sometimes they can go one for over an hour. They also gave me some Entonox for the pain as I prefer to step-up pain relief rather than go straight for the strong stuff.

Once I got to A&E I was taken to a room and the wait began. You can't be on Entonox for long which is frustrating as it meant that I was left with no pain relief and as stated in previous posts for me I'm in a lot of pain post seizure mainly because of my hypermobile joints. One positive is that I had a good chat with a 4th year medical student and explained to her my complexities and educated her about hypermobile disorders and FND so that felt good so hopefully in the future she will be able to better understand the needs of patients like me. She also took my bloods and took them successfully first time so I congratulated her for that as it took the paramedics today two attempts to get and IV line in.

Eventually the Dr came and he was nice but he was limited on pain relief options which was frustrating as apparently because I've had Entonox I couldn't have a medication called Penthrox (even though I have been able to before in other admissions - again another reason why I feel I need an A&E care plan in place so there's a clear plan on what medication I can and can't have and for my individual needs too). Pain makes me nauseous so he agreed that I could have some IV Cyclizine (and anti-sickness medication) and he also gave me some IV paracetamol which took the edge off the pain but didn't really get rid of the pain completely but that was all he could really give me apparently. My myoclonic seizures then flared up so after a while and consulting with another Dr I was also given me some IV Lorazepam to calm things down which worked so I think that's maybe why else they couldn't give me much else pain relief wise? The nurses where okay too, the nurse that brought me my meds got me a heated blanket and a coffee and put it in a beaker so I didn't end up wearing it. 

So all in all not a bad A&E experience, it's just this pain relief thing that we need a plan for but luckily at home I have what I need as breakthrough pain relief. I got an email form my care agency's nurse Debbie (who's amazing) and she's chasing up my GP and A&E to get this care plan sorted so hopefully I can give you an update on that soon and hopefully no more A&E admissions this month!

A&E has become my norm but I hate going there; I hate the inconsistency in care that I get. No-one really thinks that a 24 year old needs help to get to the toilet or with sitting up or putting a jacket on or is at risk or falls. I'm tired of having seizures, I'm tired of A&E and hospitals. I'm sick and tired of being sick and tired.

As a pick me up when I left hospital I got myself a Costa coffee as a pick-me-up. I'm home now and I'm exhausted but I wanted to to blog as its a distraction form the pain and I know that I'll be tired tomorrow thanks to M.E. and Post Exertion Malaise* but thankfully Wednesday's is one of my day's off from the TC and I only have my carer coming for an hour in the morning so I can have a rest and recharge day. My plan for the rest of the day is to rest, maybe sort out some more of my blog and tonight Silent Witness is on which I enjoy.

My Stickman Communications folder also came in super handy and I'll have to post about that one day too. Basically Stickman Communications produce cards with info about various images but also one like "I have many joint problems, please don't touch me without permission" and " Please keep questions to a minimum. Especially if you want a sensible answer." In it I have all my essential information like allergies/intolerance, a list of meds, contact details etc. It's VERY handy to have and paramedics and nurses love it.

So today I am in gratitude for:

  • The paramedics, Drs and Nurses
  • Free healthcare from the NHS (despite it's flaws)
  • The heated blanket as it was VERY cold in my room
  • The hospital offering Costa coffee with soya milk
  • Stickman Communication who make awesome products
  • Students who can learn from patients like me as they are the future generation

* "Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity".